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Posts Tagged ‘regrets’

It’s been about seven years since my mother’s memory loss became particularly noticeable. In that time, I’ve watched her become lethargic, angry, fearful and depressed. When she was first diagnosed, I held on my memories of the vibrant, creative, and adventurous woman I’d always known.  I suppose I was hoping that my memory of her would bring her back. As the disease progressed, my focus shifted back to the present, to help both of us function with what she’s facing now. In some ways this helps numb the pain of hearing her forget my name or watching her struggle to complete tasks most of us take for granted. It might even shield me a little when she tells me things like, “I don’t understand why my brain doesn’t work.” “I’m not good for anything.” And, “I wish I were dead.

But now, who she is today is all I have. When I think of her, I can no longer feel the presence of who she used to be. I can’t feel her laughing when I think about how we used to tell funny stories, tag-team style. I can’t feel her love when I think about how she used to hold me when I needed to cry on her shoulder. I can’t feel her spirit when I think about how she used to love to go on little adventures. I only feel her loss. So another cruel aspect of Alzheimers’ is that it hasn’t only stolen my mother’s memory, it has also stolen my memories of her.

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I miss my mother’s vibrancy.  She always seemed so ALIVE.  She laughed and cried freely and when she was mad, you felt it — even if she didn’t say a word.  (Especially if she didn’t say a word.)  And she was sort of like the Energizer Bunny — always going, always doing.  

Her middle name was Gene.  Dad used to say the G really stood for “go.”   Someone would call and say, “Billie, do you want to go _____.”   My normal response is to assess all the things on my to do list and renegotiate for a different day, but Mom would just say, “What time are you leaving? ….  Oh, sure, I think I can do that!”  And off she’d go.  Note that the invitation could be to go down town, or to go on a road trip.  She went to music clubs and tatoo parlours.  The only invitation she consistently declined was for a trip to the snake farm.  Her fear or hatred of snakes was stronger than her curiosity about the type of people who would work and visit there.

A number of years ago, before the Alzheimer’s took over, we were floating around the pool with some of her friends and Ida said, “Hey, there’s a meteor shower tonight.  Wanna go?”   Dot and Mom both said yes.  I had my sights on sleeping (they weren’t even going to leave until after midnight) but she was so excited about the adventure, I couldn’t say no.   When someone else at the pool asked, aren’t you afraid of going out into the country by yourselves, my mom said, “No, Dot’s got a gun.”  I thought it was funny and went home to take a nap. 

Mom woke me up around midnight (she apparently didn’t need to sleep) and we crawled into Dot’s car.  (OK I crawled, mom all but hopped.)  Off we went to look for meteors.  We found a quiet spot in the middle of nowhere, miles from the city lights that would have dimmed the view, pulled out blankets to lie on, Dot pulled out her gun and we watched.  They were fine.  I was a bit nervous.  Somehow being around an armed 80 some odd year old woman….  I just hoped she didn’t feel the need to use it.  We lay there awhile, watching the sky.  They giggled like school girls, telling jokes and funny stories.  The fact that we only saw 3 or 4 meteorites didn’t seem to bother them much.  They filled out the sighting list, noting that we’d also gotten to look up at the stars and had seen a w a few satellites and a couple of bats.  We’d had an adventure.  What else can you ask for?  (I suppose, “nothing got shot” was icing on the cake.) 

Now, her vibrancy is gone.  It bubbles up every once in a while, but mostly she sits in her chair and naps.  Her “Yes!” in response to the question, “Mom, ya wanna go/do ___________” has turned into a “No.”  Her adventures now are just memories, and even those are fading.

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Our culture has created guides to help us navigate the markers that correspond with youth.  We have books that tell us how to deal with baby’s first tooth and baby’s first step.  Magazines and TV shows tell us how to deal with our child’s first day of school, the first band concert, the first date, the first heartbreak, the first drunken escapade, the first job, the first college acceptance letter, the first final exam, the first college degree.  These markers are, if not exciting (it’s hard to imagine being thrilled at the sight of your teenager staggering across the living room) at least offer promise that things can get better if you can get your child back on course.

There are no real guides to prepare you for the markers associated with Alzheimer’s.  Once the markers hit, there’s no hope for things getting better.  You can read the lists of signs and symptoms and even go to a support group, but when stumble over or slam into the markers, you’re own your own.  Denial may be the only useful tool you have, and it only lasts so long.  For example, the first time Mom forgot what day it was, I just chalked it up to “senioritis.”   I used the same excuse the first time I had to help her fill in a sentence.   The time we got lost on the way to the library, I was just about to slap on that excuse, until I saw her cry.  “Senioritis” makes you laugh.  This was something different and it hurt her.

What do you do when you’ve run out of denial?  You have to sit with the feelings until they move through you.  This may take years.  I still remember how my heart broke the first time she forgot to send a birthday card.  She’d never, ever forgotten my birthday so I knew this was a sign that she was slipping away.  And I felt like someone ripped my heart out and put it in a blender.  I was scared of losing my mother.  I was angry at the Alzheimer’s for taking her away.  And the sadness felt unbearable.

The first time I coerced her into taking a shower sent my heart right back into the blender, same pain but with some different feelings thrown in for good measure.  I’d  been home a week and she hadn’t bathed since I’d gotten there.  It was summer and she was, to put it mildly, ripe.   She’d said the night before that she’d take a shower in the morning.  When lunch came and went and still no shower, I pushed.  We sparred.  She said she’d already taken a shower.  I pointed out that she hadn’t.  She got defiant.  I got honest and told her that she stunk.  She cried.  The fact that she took a shower did little to assuage my guilt.  I’d been mean to my mother and I couldn’t take it back.

With Alzheimer’s, it’s not just what you can’t take back that’s hard.  It’s bearing witness to what you can’t take away.  Last Christmas, Dad sent me in to help Mom get dressed.  I walked into the bathroom and found her drying off with a wash cloth.  I handed her a towel which I suggested might work a little better.  She took the towel but instead of thanking me, sat down on the toilet,  said, “I can’t do anything right.  I hate myself.  I wish I was dead.”  I stood there, speechless, and watched her cry.  I’d never had to face my powerlessness so directly.  There’s no joke you can tell or pill you can fetch that will take away this pain.  Words felt impotent against my mother’s misery.  All I could do was reach out and hug her, wrap her in my love, and hope that this would be one of those moments she forgot.

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Before Mom got diagnosed with dementia, I used to get so annoyed with her that it was all I could do to make myself talk to her.  She’d repeat stories, sometimes 3 or 4 times in a conversation.  At the time, I took this as a personal affront.  I thought that she was lonely and was talking at me as a way to kill time.  I decided that she wasn’t really connecting to me, that she was just going through the motions of being my mother but that I didn’t really matter to her.  I took her inability to track her stories to mean that she didn’t love me, and I felt devastated.

If only I had understood that she couldn’t help it, I might have been able to re-frame her repeated stories as a desire to connect with me.  Maybe I could have seen that she wanted to include me in her world.  Maybe I could have felt her love flowing through between and through the words.  And maybe I could have echoed that love back to her when she could really take it in.

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